I'm normally on the thyroid forum but have posted on here a few times and I would value your expertise. Sorry for the magnum opus post 😁
I've been on B12 injections for a number of years, used to be every 13 weeks but as I have other conditions, Fibro, Ehlers Danlos and hypothyroid and I've had persistent muscle twitching and pins and needles in my hands and feet all the time for years, I managed to beat my surgery down to a jab every 8 weeks. I've been on these for about 18 months.
I've never received an explanation for my parathesia but as anyone with Fibro can attest everything gets blamed on that, and as I have several conditions where there is alot of symptom overlap, it can be impossible to differentiate between them.
Whenever I've had my B12 blood levels tested by NHS they are really high, I know its pointless doing them but the GP always orders them when they are doing other tests like FBC. Just shows they dont read our records lol.
I think mine are often significantly over range. The reason I ask is I started having weird balance issues 2 years ago. Its been put down to vestibular migraine, I've seen a Neuro and ENT specialist but I dont fit the criteria and no anti migraine meds have worked and I've tried at least 6. I've tried vestibular physiotherapy, pretty much anything I can think of including seeing a chiropractor. I stopped the latest migraine in January and I'm no worse not being on it.
I'm not dizzy but unbalanced when I walk. Its not terrible and has improved since 2022 but its still a constant sensation. Rather like walking on a trampoline or a spongy floor. I'm aware of the connection between low B12 and neurological issues, but is it possible that with my high B12 blood levels that I'm not getting enough B12 into my cells, ie functional B12 deficiency and is there any test I could take to prove it?
Just for the record I'm a lifelong vegetarian and have struggled with low B12 all my life. Only started on jabs about 10 years ago. I'm wondering if its caused permanent damage. Your input would be much appreciated. I'm still seeking answers and dont want to keep going down rabbit holes.
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Sparklingsunshine
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Unfortunately I have several overlapping conditions that mean I can't tell which one is causing which. I didnt know if its worth trying the active B12 test?
I see . Yes , I would say it is worth it when a had b12 blood serum test and an active b12 test within 2 days of eachother, the blood serum test was right off above the scale. The active B12 reading was just over 1/2 the full range . But it will still be tricky because optimum levels differ from patient to patient . And anyhow , it can take a few years of injecting to clear symptoms , as we read in patients accounts on this forum. It is indeed difficult for you to judge if you have different conditions with the same symptoms as eachother .
hello sparklingsunshine, I used to get the spongy floor sensations regularly at the time i only knew i had M.E., which I attributed it to.
The nhs test is as you say pointless, you would have to privately do Active B12 blood test to find out real, cellular level B12. I used medichecks recently but many more labs online. Thyroid uk has several listed.
Eight week injections may be insufficient to effect healing. Have you considered self (or willing person) injecting more frequently , to see how that helps.
Frankly I'd consider murder or sacrificing a goat to Lucifer at this pojnt lol. I'm certainly not averse to self help. I source T3 for my thyroid and get Low Dose Naltrexone for my Fibro privately prescribed.
I've tried so many things over the last two years, as I said its hard when you have several conditions to know which one is the culprit. All I know is I feel pretty rubbish and I'd like to know what the cause is. Basically two years ago this month I had a migraine, which had been happening more and more frequently, the day after the migraine I started experiencing the spongy floor sensation, which has never gone away.
I've had brain MRI and nerve conduction studies which were normal so no MS or other Neurological cause was found. So was told Vestibular Migraine but I've never bought that. VM has very specific criteria, which I dont meet. I dont understand how you can just lose your balance overnight unless its something like a tumour or stroke.
I've been down a lot of rabbit holes over the last two years and because my NHS B12 results on blood tests were always so high I guess I dismissed the possibility that it could be that but I'm willing to consider anything at this point. Any advice on self injecting gratefully received.
I literally lost my sense of balance over the space of a few hours one afternoon.
It started off with dizziness, which I initially put down to being hungry or low blood sugar, but by the evening I felt as if I were on a merry-go-round and the room was spinning - it was very frightening. I was taken to my sister's house nearby but the driver had to stop several times as the motion of the car made me vomit.
Long story short, I promptly saw a specialist who did tests and I was diagnosed with vestibular neuronitis and given head exercises to do. No cause was identified but the exercise programme did the trick and I slowly regained my balance.
I never had vertigo or spinning, I was tested for BPPV, the most common cause of dizziness. Mine literally came over night following a migraine, but I had no virus, no ear infection or any precipitating event. Mine was just feeling off balance all the time when standing or walking. And unfortunately the vestibular rehab exercises haven't helped me 😒
My specialist said the issue was in my inner ear but it wasn't preceded by illness, an infection or a virus. I had to do them continually without a break and build up gradually, twice a day in order to regain my sense of balance. Started with about 10 mins and by the end, 6 months later, I was spending 3 hours doing them each time. I can't remember the name of the tests I had but they didn't involve imaging. I think I had an electronystagmography and and audiology test.
I saw under the care of a vestibular physio and we tried the exercises but even she said she didnt think they would help in my case. Mine seems to be neck related rather than vestibular.
A very familiar story! In the NHS at least. Thankfully I was living in Mexico at the time and finding the right specialist was easy. Worth every peso I paid.
yes, I am so pleased overall. s.i. 3 times a day, sometimes 4. Nearly a year now.
I have balance problems and eyesight problems that adversely affect balance. I used to fall over frequently. Stumble and overbalance and fall into walls, doors, chairs. many times a day etc.
First I noticed my grip was stronger. I felt stronger.
Maybe a couple of months ago I noticed my core or balance was better. If i lost my balance I was able to right myself. No falling down, fingers crossed. I do not know if this will last. I hope so.
I use sublingual drops in between jabs and all my vitamins are good as I supplement all the time. My vestibular physio suspects I have cervical spine instability in my neck due to EDS as I get a lot of pressure at the back of my skull.
Its really hard to play detective, I've given up on NHS tbh and am left trying to work out what's going on. As they've ruled out anything life threatening and told me its vestibular migraine as far as the NHS is concerned that's it.
Me having Ehlers Danlos is another complication as due to lax ligaments and joints I'm prone to clumsiness and balance issues from that. Although I've had it over 50 years as its genetic and never had clumsiness or balance issues before.
Feels like another cop out. I'm used to chronic health problems but I'll admit this one has been the worst. Its really affected my quality of life.
I've been looking at getting an active B12 test privately. The homocysteine and MMA ones are presumably NHS tests? Sorry about your arm, hope its on the mend.
I dont know how I feel about approaching GP. The ones I've seen assume everything must be peachy once on jabs and as my NHS B12 tests are usually very high I'm scared they'll take my jabs away. Plus as I have Fibro they blame everything on that 😒
We see this so so often on the thyroid forum and I'm sure PA/ B12 deficiency is just as badly treated. I've been ok, apart from the battle to get jabs every 2 months not 3 but I'm very aware of the number of sufferers being put back on tablets, having jabs withdrawn. I'm wary of poking the bear.
A trial of more frequent b12 injections would establish if it yielded a benefit for you. Realistically this would require self injection. Fortunately the lovely people on this site can provide support if you require it.
I do understand the sensation you describe and it’s unsettling. I have PA so cannot absorb B12 that’s how my B12 got so low.
I have been self injecting for a year now and I can keep all symptoms at bay apart for lower back pain which still comes and goes .
As you are vegetarian you could try high doses of oral B12 (British supplements are good) and see how this goes but ideally you need to know what your folate, iron and potassium levels are too as they all work together and your recovery may be limited otherwise by a deficiency in something other than B12. I take a 400ug folic acid each day to keep levels topped up.
The good thing is that you cannot overdose on B12 so that’s something you don’t need to worry about. It may be worth trialing high dose oral supplementation for a couple of months and keep good symptom notes.
Have you had other blood tests done to check for other things?? Alot of your symptoms you describe could also be caused by low iron!!
You’ve been on b12 a while so there could be other causes, alot of people with b12 issues also have iron issues, and iron levels can naturally drop when you have b12 injections, since the b12 needs iron to build new red blood cells and help heal the body.
Yes 18 months ago it was tested by NHS and was all good, which surprised me as I've always struggled with low iron. Guessing being post menopause has helped 😁
That is too long ago, you need to have ferritin checked regularly, possibly every 6 months, especially if you've had low iron in the past and are having B12 injections. Things can shift much more quickly but GPs won't realise this. My iron levels dropped fairly quickly in the first 3 or 4 months of EOD B12 treatment.
My bloods were tested in hospital at the end of February this year when I had to go in with an asthma exacerbation. Nothing was flagged up. Since being post menopause my iron levels have behaved themselves.
The spongy underfoot feeling sounds like numbness in soles of the feet due to nerve damage - although I'm not medically trained.
Neurological symptoms with B12 deficiency should be treated with every other day B12 injections until no more improvement can be gained by this, and only then maintaining this with treatment every 2 months. This is medical guidance given to UK doctors regarding treatment. Even with this frequency of injections, nerve damage can take a very long time to repair. Sometimes some of the damage can be permanent - but I wouldn't assume this is the case, however severe or long-term.
B12 deficiency nerve damage can be due to demyelination of the spinal nerve bundle. This damage should be able to be detected by a neurologist via an MRI scan. Other damage can be detected by electric nerve testing (of large nerves: legs and arms) and even smaller nerves can be tested, but rarely are. Definitely neurologist's field.
It is also possible that you have functional B12 deficiency. If the problem is that your serum B12 is high and your serum MMA is high, these two are perhaps not forming links in the bloodstream in order for sufficient B12 to be transported to where it is needed at cell/tissue level. A serum MMA test would be able to rule this in or out as a possibility.
My MMA was tested on GP request when my B12 injections, given for B12 deficiency, did nothing to alleviate symptoms. It was raised. This gave me a confirmed functional B12 deficiency diagnosis and a restart of injections at 2 per week. Despite this frequency, it still took three years for my MMA to drop into range. This was tested in all 6 times, mainly by haematologists.
I now self inject twice a week which mainly controls my symptoms. They are not gone - this is symptom control not cure.
My active B12 was tested and was (unsurprisingly) high, my homocysteine was normal, my DNA gave no answers regarding MMA - but I was found to have osteoporosis of the spine so get vitamin D and Raloxifene daily, and my ferritin and folate can still be difficult to stabilise at healthy levels no matter how healthily I eat. Supplementing can be difficult without regular monitoring, as you can't guess at your highs and lows, can you ? My brain MRI, much to my surprise, was normal.
You are coping with a lot of health conditions and disentangling symptoms can be very difficult, I'd imagine. I hope at least some of this helps. The ideal would be to have a really good supportive GP who can help, observe, monitor and refer- and then some continuity. Also difficult now.
I've had nerve conduction studies which were all normal. Yeah I'd love a supportive GP but have never found one. My experience of chronic conditions is once diagnosed you are "parked"by the NHS and left to get on with it.
I have wondered about peripheral neuropathy in my feet but as my nerve conduction studies, which I've now had twice were all normal I dont think they'll consider it. I did wonder about small fibre neuropathy as well. I'm wondering whether to push this with a GP or not? I dont want to lose my jabs lol.
I do remember someone on this forum mentioning they have had that done. Painful, but damage was found that was not discovered in larger nerves. A while back now.
Perhaps one to ask for when you next see a GP for something else- and find them in an approachable mood ?
I did have an excellent GP, but she left to work for a local hospital. Two others from the same surgery did the same thing. I think the best of them were as utterly disheartened with the introduction of compulsory telephone appointments as we were.
Yes my previously excellent GP retired after covid, I'd seen her for decades. She had enough of telephone calls, said she felt like a call centre worker, not a doctor.
She missed seeing patients face to face. Its was a real shame. I rarely see GP if I can help it lol. As you might have inferred they aren't my favourite people. I just dont have any faith in their ability to manage chronic conditions.
I had exactly the same spongey feeling you describe that started shortly after B12 injections. My understanding is that the B12 deficiency exacerbated pre-existing migraine that I had. This symptom is commonly part of vestibular migraine. I resorted to self-injecting B12 every 10 days and got help from a neurootologist for the vestibular migraine. Also see mvertigo.org website for more info on this). I take medication for migraine and made diet changes that have really helped! It did take a while to calm down though. Stress also really seems to exacerbate it. Of course it may not be the same but I hope some of this is helpful info for you.
Yes I joined M.vertigo. None of the 6 or 7 anti migraine meds worked for me, I took Venlafaxine for 11 months as a lot of members said how good it was. It make no difference so I came off it and in the 4 months since I did no migraines, no other VM symptoms.
It seems to me that both the Neuro and ENT took the fact I got classic, ie non VM migraines and was suddenly unbalanced and made 5.
I've never bought it and the fact that no migraine meds have helped and I've tried beta blockers, calcium channel blockers and several anti depressants and absolutely nothing has helped with the balance, which is my only real symptom, leads me to think something else is responsible. I have no migraine symptoms anymore, just this weird off balance sensation.
Ah yeah sounds like it’s unlikely to be migraine related then. Definitely worth increasing your B12 injection frequency to see if it helps. Hope you find a solution!
Amongst the other blood test results, what was your folate reading (and lab range)? Sufficient folate is required to move the B12 into the cells where it's needed. It is usually recommended that the folate should be in the top quarter of the lab range.
Have you tried betahistine for the balance issues? They say that I have vestibular migraine, as I don't have significant hearing loss but beta histine works for me, suggesting it's more likely Menieres disease. I've temporarily stopped the b12, as I felt so awful taking it and, like you, my bloods were off the scale. I plan to test again at the 4 month mark, so see if it was just a diet thing for me.
Also, I developed the most horrible anxiety while reversing out, which was something I never had before. I was suicidal, so I chose the easy option and stopped the SI. I also realised all my symptoms were worse before and during my period. This included the peripheral neuropathy. Long story short, I'm a month into HRT and have 'mostly felt more like myself than I have in years. It appears that it has been more a low oestrogen thing for me. Only issue is, as soon as I started the progestogen side of the hrt the symptoms returned within 24 hours. Anxiety and pins, needles and tremors were back. I'm now about to try a different brand. Just praying I don't have the same reaction to it!
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